This is Saxon, our energetic little man who was diagnosed with Cystic Fibrosis when he was a week old. We gathered together many friends and family members and created Strides for Sax. Our mission is to raise money and create awareness for the Cystic Fibrosis Foundation to find a cure for cf. This is all about Sax and our team's efforts for the cause. As of the creation of this blog, Saxon is 21 months old, has been hospitalized several times for pneumonia, and had undergone 3 surgeries since his first birthday.

Saturday, October 8, 2011

Weighing In and Weighing Up

It was a good weigh in for Sax on Sept 28th, and I'm expecting another good one this Wed too.  He was up to 14.6 kg.  The Prilosec seems to really be working well!  Yay - making some progress!!  We also just got his PediaSure and DuoCal refilled, and this time they gave us the PediaSure 1.5, which means we get 50% more calories per can before adding the DuoCal.  That should really help too!!

Daddy and I went out last Saturday to celebrate his birthday.  We were only gone a few hours and the kids were home with a sitter.  Just as we were packing up our leftovers, the sitter called to say that Sax was sick and throwing up all over :(  We hurried home.  He was still on antibiotics, so I was surprised when we got home and he had a fever.  He threw up again after we got home.  The sitter stayed with Raine while Scot and I took Sax up to the Emergency Room, since Urgent Care was already closed.

While we were in the Emergency Room, Sax threw up again.  The doctors checked him over and didn't really find anything.  They figured it was just a stomach virus.  They gave him a dissolvable tablet to stop the nausea, with another one to take home with us and a prescription for more if we needed it.

When we got home, the sitter's mom came to pick her up since she was out and about anyway - and it was still before 10.  Sax and Daddy curled up together in Daddy's chair and ended up crashing there for a couple hours.  Raine and I watched some stuff on Nick for a while, and I ended up falling asleep in the recliner.  He seemed fine the next day, but was mad at me since I wouldn't let him go to Sunday school.

The little man has been testing his limits lately, which is getting really frustrating for me.  Daddy has been working on Saturdays now since my doctor appointments are moving to a weekly basis.  The boss said he could go to my appointments as long as he makes up the time.  It gets frustrating at times because the kids seem to listen to him better than me.  Maybe it's just because they spend so much time with me.  Who knows.  They're both napping right now, so I'm going to enjoy the quiet :)

Friday, September 23, 2011

Prilosec Pills and Omnicef

I have some updating to do, as usual.  Up until today, we haven't had too much in the way of health issues for the little man. Or, not major ones anyway.

Sax just moved into his sister's room into new bunk beds.  He likes going to bed more now because he has a big boy bed now!  The top is a twin bed (Raine's bed) and the bottom is a full-size futon (Saxon's bed).  For now we're leaving it set up in couch format since that's all the bigger his crib mattress really was anyway.  It seems to be ok with him, plus he kinda sinks into the crease, so he doesn't move around too much and hasn't fallen out.  As a precaution, Daddy has been putting up the baby gate in the hallway so that if Sax tries to go from their room to ours, he can't accidentally fall down the stairs.  (This isn't too much of a problem unless pregnant Mama needs to use the bathroom in the middle of the night!! lol!!)

We tried Sax on Prilosec liquid suspension for a while.  This was a total failure.  He hated, and I mean HATED, the taste of that.  No matter how we tried to disguise it or hide it or mix it into anything else, he still wouldn't take it.  Well, Vicki came through for us again.  She called and asked if she had heard me right when I said before that Sax was swallowing his enzymes whole.  This was GREAT for the little man!!!  There is a 10mg Prilosec capsule that is very similar in size to Saxon's Creon 12, which is the right dosage for him.  Well, since he'll swallow his enzymes, we just told him it's like a white enzyme, and he swallows it with no problem!  If this works like it's supposed to, it SHOULD cut down on his tummy problems even more, help him absorb more of his food, and boost his weight.  We're keeping our fingers crossed!  He's already started eating more!

We are also monitoring Sax's weight since at his last appt he was down again.  I have set up bi-weekly weigh-ins with the clinic here in town.  Last week, Sax weighed in at 14.2 kg.  Today, when I had to take him in to Urgent Care, he weighed in at 14.4 kg.  Pretty good for only a week.

Yes, we were in Urgent Care today.  Not fun.  Tuesday Raine had been sent home from school with a sore throat and fever.  She's started a cold around Saturday or Sunday with a little coughing and a runny nose.  Took her into Urgent Care when the school said that strep throat was going around.  Sure enough, strep and an ear infection.  10 days of antibiotics for her.  I kept her home Wednesday, per doctor's orders, while the antibiotics took effect.  Wednesday night she was up half the night blowing her nose and coughing again like she did Tuesday night, so I kept her home on Thursday too.

The problem with having a sick child at home is that the other will usually end up sick.  I'm surprised it took as long as it did. 

I tried to keep the kids separate, Raine kept her hand sanitizer and Kleenexes with her at all times.  (Poor girl has been blowing her nose so much that she's been having nose bleeds.)  I told her she needed to rest so that she'd feel better.  Couldn't send her to her room to lay down because then the little man wanted to be up there.  He wouldn't nap and would just keep her up, so I just told her to lay on the couch.  Her number 1 complaint?  "It's no fun having to rest and watch your brother play!!"  Of course, this meant about every 5 minutes I was telling her to get back on the couch, or telling him to get off the couch and off his sister, or telling her to put his toys down before he spread too many germs.

Today we sent her back to school - she wasn't resting much at home anyway.

This morning, at 5 am, we got a wakeup from Sax, wanting to crawl into bed with us.  And sounding congested.  And gunky.  And just plain clogged up.  Have you ever listened to someone talk or breathe, and you just can't help but clear your throat or cough because you can just hear the junk in their throat??  That's what he sounded like.  And as much as he coughed, it didn't sound like it was loosening up.  Him and Mama went to sit in the recliner so that he'd be a little more elevated and could maybe breathe a little better.

Daddy did a thumps and nebby treatment on the little man about 6 am.  Sax and I went to Urgent Care about 8 after dropping Raine off at school.  The nurse thought it was cute that Sax knows the routine for getting weighed in - walked over to the scale and took off his shoes, then stepped up like a big boy!!  We went to the exam room and waited for the doc from there.  I made sure to let them know that yes, he's already gotten his flu shot (family activity Tuesday night - lol!!  Except for Raine, who can't get hers until she's feeling better.) 

The doc we saw today was a new one for us.  Her name is Lynn Kelley and she is semi-retired.  I was very surprised when I told her about Sax's CF, and she said she spent some time studying specifically in CF!  She also knows Dr Henry, the other pulmonologist that we see at Mayo when Dr P is gone.  We thought that was pretty cool, and she completely understood our concerns with Sax's breathing.

Sax did pretty good for his entire exam, including his throat culture. She said his lungs are sounding good and pretty clear. His O2 sats are 98% (which she said was due in part to his morning nebs), and his ears look fine. She did think his throat looked a little red and irritated and his glands are a little swollen. The rapid-strep test came back negative, but she said they will still culture it and I may get a call in a day or two if it changes. I asked if we could do an antibiotic to fight the cold/congestion and to head off the possibility of strep. She said that's exactly what she thought too - and the antibiotic will help prevent the cold from turning into pneumonia too.  Sax is sounding pretty hoarse anyway and he's got a pretty nasty, barky sounding cough.  It's the kind of cough that makes your chest hurt just listening to it.

We're running him on a 10 day dosing of Omnicef.  Hopefully with the changed medications, we won't have the same digestive issues we've had in the past with it.  Honestly I think Omnicef is about the best antibiotic he can be on since it seems to really take care of the problem pretty quickly.  I was surprised that the dosage is so low (only 1/4 tsp) but Sax love the strawberry-vanilla flavor and asked if he could have more after taking it.  We're keeping his treatments at 3 times per day - hopefully that will do it.

I'll post later in the week with how he's doing.

Wednesday, August 17, 2011

Checkups for Sax and baby

Haven't posted in a while, but fortunately there hadn't been anything to post about!!  Saxon's checkup 3 months ago was good, with the exception of him needing to gain weight.

Yesterday we were back in Rochester for another 3 month checkup.  Unfortunately this appointment wasn't all we had hoped it would be.  Our first appt was with x-ray.  Of course Daddy had to take him since Mama can't go in there with the little one on the way!!  Sax did NOT want anything to do with the x-ray - he screamed and fought Daddy enough that he had red spots under and around his eyes.  As soon as he was done with that, it was on to see Vicki and Dr Henry.  Normally we would be seeing Dr P, but he is out on medical leave.  He should (hopefully) be back sometime in Oct, but they're not positive.

Sax's weight is at 14.4 kg, up only .1 from his last Rochester visit, but up .4 from his 3 year checkup here in Albert Lea.  Again we were told to fatten him up!!  (We figured that one is a given.)  He fought the throat culture like crazy too, when he had been doing them so well.  Dr Henry pulled up Sax's x-rays when Vicki was done with him, and the films didn't look too well.  She pointed out how there was more infiltration in the upper lobes of his lungs and along his heart line.  (For now we are upping Sax's CPT to 3x per day and adding in 5 minutes of manual CPT on each side for those upper lobes.  The way his vest fits, the upper lobes are where the straps are, so there isn't as much compression in that area.  Hopefully this will work!!)  She said there was a spot on the lower part of one of his lungs that she was concerned about.  Dr Henry said the spot is either a dense clogging of mucus, or could also be a spot where part of his lung has collapsed.   This showed up on the May x-ray also, I guess, but Dr P never mentioned it.  Sounds like for now they are just going to watch it.  Sometime next week we should have the results back from Sax's throat culture.  After discussing the awful effects of Zantac with friends on CysticLife, we've also gotten Dr Henry to give Sax a prescription for Prilosec to see if that will work.

Today Mama and baby had a checkup - 21 weeks, 3 days.  We found that the pocket of blood has not dissipated at all - looks to be about the same size it was before.  Mama is still bleeding.  Baby weighs about 1 lb now, though, is the right size, and the baby's heartbeat is strong.  We weren't to excited to find out the baby still has echogenic bowel.  This could mean either 1) the baby swallowed blood and it's taking a while to digest, or 2) it could be a precursor to meconioum ileus, which would mean the baby would have CF.  If it is meconium ilius, the baby will likely need surgery right after birth.  Of course, the surgery would have to be done in Rochester.  We have told our doctor here, Dr Yahya, that we would like to have the baby in Rochester.  We have already been over to see a high risk specialist there, Dr Rose.  According to Dr Rose, the game plan is that we will start steroid injections at 24 weeks to help baby's lungs develop.  Because of the complications I have been happening (which, according to Dr Rose, are rather rare) he said it is quite likely the baby will come before 34 weeks.  He also said they would be following my pregnancy a lot closer and we would have frequent ultrasounds.  I need to call him to see what the plan is.  Albert Lea doesn't seem too willing to follow what the specialist says.  We may end up bypassing Albert Lea altogether depending on what Dr Rose says.

Hopefully we'll find something out soon and get everyone on the same page.  It's hard to manage care when people aren't communicating and the right hand doesn't know what the left is doing!!

Sunday, May 22, 2011

Vacation 2011!! - Days 3 & 4

I thought there was just too much to share in one post, so here is the rest of our trip :)  Saturday (May 14) started out as any of our other days, with breakfast in our cabin.  Then we headed to Hill City to do a little window shopping.  We had been planning on finding some Black Hills Gold jewelry, but it was way too expensive in town, and my fingers are too swollen to buy what I really wanted - a gold ring. 

We spent about an hour or so wandering around from store to store, then we headed to Prairie Berry Winery.  Unfortunately there was no wine tasting for me :(  But Daddy was a champ and sampled a couple for me :)  I brought two bottles home for after baby comes - a pear wine called Gold Digger, and a dessert wine called Strawberry Fusion.  Can't wait!!  We had planned on having lunch at the winery bistro, but even their kids' menu didn't seem very kid friendly. 

After Daddy patiently waited for Mommy to look around the winery and he kept the kids content, we decided to head into town to the 50's Diner for lunch - major score!!  The kids loved the lighted signs and the 50's decor.  The waitresses were dressed in poodle skirts.  The food was great - we all got shakes or malts.  Sax went for spaghetti, Raine had Mac & Cheese with fries (of course!), Daddy got a chili-cheese burger with rings, and Mama got a BLT with chili-cheese fries.

The only bad part about the diner was the table behind us.  I have a ton of respect for those in the military.  However, the type of crude and vulgar language coming from the Army National Guards sitting behind us - in uniform, mind you! - was completely inappropriate for a family restaurant, especially when there are small children in earshot.  I am VERY disappointed in these men!!

Anyway.  After lunch we headed to the depot to get our tickets for the 1880 train ride.  Sax was really excited that he was getting to go on a real choo-choo train!  On the way from Hill City to Keystone, he sat with Mommy and Raine sat with Daddy.  On the way back, Sax slept on Daddy and Raine sat by Mommy.  The scenery was interesting and again we saw a lot of deer.

We kept things pretty simple on Saturday.  After going on the train, we headed to the grocery store and got a few things we needed to go with supper since we were cooking over the fire at the campground.  We ATTEMPTED to roast marshmallows for s'mores too, but that didn't work too well.  I had a nice fire going for the steaks and hot dogs, but put the fire out to go in and eat since it was cold and VERY windy out (Did I mention that it was snowing??  It snowed most of the day Saturday - not enough for there to still be snow on the ground, but enough to make it cold!!)  When I went out to start the second bundle of wood, I couldn't keep a good fire going because the wind had picked up more.  Some of the wood was moldy too, which really wasn't helping the situation.  We ended up making the s'mores in the microwave :/

Sunday was time to head home.  Our first stop after checking out of the cabin was to go to Old McDonald's Farm.  Even though our tickets were for Thursday, they still honored them for Sunday because of the bad weather.  The kids had a lot of fun.  Saxon tried going on the pony ride, but got scared, so Raine got to go twice and used Saxon's ticket.  They got to hold and pet baby chicks and turkeys, fed some goats, sheep, pot-bellied pig, fish, piglets, ducks, geese and calves.  They got to pet most of those, along with longhorns, ponies, and donkeys.  They particularly enjoyed bottle-feeding the calves.  It was super cute!!

Our last "attraction" to see before home was the Ellsworth Air Force Base - South Dakota Air and Space Museum.  About the only thing there that the kids were interested in was the airplanes.  They really didn't want to see much else.  Saxon's obsession was with the helicopter and how big all the wheels were.

The rest of the way was pretty uneventful.  The car acted up a few times, but we took care of that.  We stopped at a truck stop in Mitchell called Marlin's for supper which was really good.  We made it home about 11pm.  Saxon was so happy to be home and sleeping in his own bed :)  He wasn't the only one though!  A few times on the trip he told us he wanted to sleep in his bed, but in spite of that, he seemed to have quite a bit of fun!!

VACATION 2011!! - Days 1 & 2

We had a wonderful vacation!!  We left Wednesday night (May 11) for Hill City, South Dakota and came home on Sunday (May 15).  Of course, it rained once we got to Worthington, and rained all the way there and all day Thursday.  Plus there were a million deer between Rapid City and Hill city, which isn't fun at 3 am, so the going was slow there.  I ended up with about 3 1/2 hours of sleep Wednesday night since we had a lot scheduled for Thursday. 
Our Cabin and the 'bu

Breakfast in the cabin

We started out with Bear Country USA.  It was fun, even though it was raining.  Most of the pictures didn't turn out very well because of the combination of the rain and the camera flash (my digital camera display is broken, so I'm just glad so many of the pictures DID come out!!)

Next stop was Reptile Gardens.  We got there in time to see the snake show, which was interesting.  He had a large python, about 12 feet long, a cobra, a rattlesnake, and a couple others too.  Of course I held the python.  Saxon was afraid of the snakes.  Raine finally braved up and pet the python though!! :)  Sax was ok with the gators, snakes, and lizards that were in the cages.

We had planned on going to Old McDonald's Farm, but they weren't open because of the rain.  We headed up to Mt Rushmore instead.  It was still rainy and cold and it even started snowing while we were up there.  Really glad we remembered to pack the hooded sweatshirts!!  We  had checked the forecast and it was supposed to be in the 60's and clear.  But I guess in the mountains, the weather isn't that predictable!!  A lot has changed at Mt Rushmore since I was there last as far as the museum and the parking.  The kids seemed to enjoy it :)

We had eaten breakfast at the cabin and we packed lunch, so we checked out Chute Roosters for supper.  We were sitting down to supper - leather topped tables and leather chairs - a converted barn - and Raine cracked us all up.  "Geez, Mom, this place is pretty classy!"  Funny stuff!!  They had really good food!!  Scot and I both got steak and veggies, Sax got a corn dog, and Raine got a cheeseburger, and we shared a potato appetizer.  HIGHLY recommend Chute Roosters if you make it out to Hill City!!

We tried getting to bed early that night since both Mommy and Daddy we just beat.  The kids had other ideas.  They weren't tired since they'd slept in the car.  Sax was scared, so he wanted to sleep with Daddy and Mommy, then Raine got scared, so Mommy ended up going over to sleep with her.  Man is that girl a bed hog!!  And a kicker!!  Sax wasn't much nicer to Daddy.  Actually, when I got up, Sax was sleeping with his feet by Daddy's face.  Apparently he spun around all night, so Daddy didn't get much sleep either.

Day 2 - Friday - started out with much better weather than Thursday.  It was only in the 50's for a high, but it was sunny :)  After eating breakfast in the cabin, we headed off to the National Museum of Woodcarving.  Of course the kids didn't want to sit through the video explaining who did most of the carvings, so we headed for displays after only watching a few minutes of the video.  There were a few displays that were animated and activated by coins.  Sax was afraid of some of them and Raine thought a few were too graphic.  I thought they were really interesting.  Daddy liked the train in particular.

After the Woodcarving Museum, we headed to Four Mile Old West ghost town.  Raine kept asking where the ghosts were - lol!!  We explained to her SEVERAL times that it's called a ghost town because it's abandoned.  She still didn't get it :/  Sax was really curious and wanted to look around at the buildings.  We got to see an actual spring too, with fresh water coming up.  That was pretty cool.  Plus the kids posed for a few pictures in the cutouts.  Some of the buildings were dilapidated since the "official" tourist season hasn't started and they were still doing some repairs.  But it was fun!

After the Ghost Town, we headed to Windcave National Park.  At the park entrance we saw a few buffalo grazing and a couple antelope. 

We were a little early for the tour, so we decided it would be a good time to have our lunch before heading down.  It was pretty cool going in the cave, in spite of my claustrophobia!!  We saw the original entrance to the cave... Freaky!!  Don't think I'd every be able to do that!!

Original natural entrance
 Once we got inside, Sax was kind of scared because it was pretty dark in there.  Daddy had a pen light which he let Sax carry, so he was fine after that.  Was glad we took our sweatshirts since it was about 53 degrees in there.  Some of the passages were kind of narrow, and there were places we had to duck.  We went down over 300 steps as we went in.  Much of the walk, when we weren't on the steps, were on downward ramps.  It was a little nerve-wracking in some places where the floor was wet :/  But it was still fun.  We didn't see much of Raine on the tour, since she was "helping" lead the group on the tour with the park ranger.

Our next stop for Friday was the Mammoth Site in Hot Springs.  I had been there about 15 years ago, so it was interesting to see how much more they had dug up since we were last there.  Sax ended up crashing, so Daddy had to carry him most of the time since he was getting pretty heavy.

On the way back to the camper, we debated between going through Custer State Park Wildlife Loop or Needle's Highway.  Well..... we took Needle's Highway.  My first experience actually doing the driving on mountain roads.  SCARY!!  Daddy asked if I wanted him to drive - NO THANK YOU!!  I didn't want to be the one looking down the drop-off!!  We didn't see many buffalo on the way back, but we saw a LOT of deer!!  And some very beautiful scenery.  Of course, do you think we actually got a picture of Needle's Eye when we got up there?  No.  Dang it.  But we saw a lot of snow up there and saw Harney Peak, which is the highest point between the Rockies and the Swiss Alps.  Pretty cool :) 

We'd had a pretty busy day, so we decided to just eat our supper at the cabin.  Daddy got some food from the 50's Diner and shared with Sax, and Raine and I had our leftovers from Chute Roosters.  But it was a good day!!

Wednesday, May 11, 2011

Time for a break!!

Yesterday I had to take Sax back to Urgent Care.  His eyes had cleared up for a couple days, then gooped up again.  His face was red and swollen up a bit, so I had a hunch, which Dr Mankoti confirmed - Sax has a sinus infection :(  His sinuses are clogged, he's not able to get much out when he blows his nose.  They put him on 3 mg Amoxicillan 2x per day for 14 days.  Vicki is going to check with Dr P to see if he should do it 21 days instead.  He seems to be feeling better already!!  I was told to up his nasal spray too...

He hasn't been eating much, which was confirmed yesterday when he stepped on the scale - down to 13.7 kg :(  All that hard work to get his weight up, and a sinus infection made him lose it all again.  We're hoping it's not going to be too long until he gains it back!!!!  And hopefully he's feeling better before we leave for vacation!!

Saturday, May 7, 2011

Great Strides 2011

Today was Great Strides in Silver Lake!!  Unfortunately, I didn't even think to take any pictures today. 

Strides for Sax had a small group walking this year - just the 4 (5) of us, plus Steph and Sam.  It was a beautiful day out with sunshine and temps pushing near 70!!  Gotta love it, compared to the cold wind we fought last year!  It was spitting rain on the way there, but fortunately it wasn't raining in Roch at all when we got there.

The walk started out pretty good, but when we got to the halfway point, Mommy wasn't sure how much further I was going to be able to go....  Once we hit the 2nd rest stop, though, things were going a lot better!!  A little hydration and a bathroom break did us all some good!!  Sax even decided to get out and do some walking too :)  He was having a really good time.

I guess a bit of an annoyance we had to deal with - not everyone keeps their kids in control    :(  There were girls about Raine's age who kept passing us on their scooters, then they would cut in front of us and stop and block the path.  We'd go around them and keep on our way, and pretty soon hear "Watch out!" and they would pass us, pull in front of us, and stop again.  It was getting really annoying after about 4 times of them doing it.  Fortunately Raine had to stop and tie her shoes, so that gave them some time to get way ahead of us.

The walk was going pretty smooth after that until we got to the half-way/turnaround point at Soldiers Field.  We were taking a sit-down break while Sax ran around a bit and we had some more water and juice, and there were a couple other teams there.  I was absolutely shocked when a couple members of one of the teams pulled out and lit up cigarettes!!!  With all the CFers around who have lung damage and lung problems, this is just plain unacceptable!!  Even though we have a smoker on our team, she knew better than to even think about lighting up because of the very nature of the event.

Are these people trying to poison the very people they are supposedly walking to save? 

I sent an email to the coordinator Kathryn about this and asked that it be addressed for next year's walk, otherwise we likely won't be attending because I'm not going to risk my son's lungs.

We're also trying to (possibly) arrange to have our own Great Strides walk here in Albert Lea.  They need to add one new location each year, and walking around Fountain Lake would be a beautiful walk.  Kathryn will be getting in touch with me about this soon.  I'm hoping if we have a closer walk location, maybe we can get more walkers to show up!!

Sunday, May 1, 2011

Just Another Crazy Month!!

So April 22 was my 30th birthday - and 30 has taken me on one helluva ride so far!!!

Raine and Sax had a new sitter that night, our friends' daughter Ellery, and they absolutely LOVED having her sit for them!!  Yay!!  We stopped in to check on the kids and see how they were getting along, bringing them a big piece of dessert to share (loaded with sugar of course!!)

That weekend was pretty mellow even though Easter was on Sunday.  The Easter Bunny hid baskets in the house for the kids and eggs and toys in the yard.  This year was kites, bubbles, more bubbles (always a huge win for my kids!!), and frisbees.  We knew the Bunny had left 42 eggs, so we were sure to tell Raine that she and her brother each got 21 eggs.  Sax got a 2 minute head start to try to find them... not that it helped at all.  He wasn't sure what he was looking for, but after finding the first egg, he got the idea and he was off!!  The kids put all of their change together into their change jar.  They are saving up for the fair, of course!! Any money they save up is theirs to share and spend come fair time!

Monday Sax had a WIC appointment and recert.  This was a FABULOUS checkup, as his weight has climbed to 14.7 kg, which put him into the 60th percentile - WOOHOO!!  GO SAX!!  This time, along with the PediaSure we usually get, we also got 6 cans of DuoCal - 2 per month.  It seems to be working though!

Wednesday was another HUGE day for us!  We found out Saxon is going to be a big brother!!  I am due to have baby #3 on Dec 25, 2011, so it will be one heck of a Christmas!!  We are not going to find out what we're having, and we're not going to find out if the baby has CF.  There are way too many risks involved with having an amnio, and we'd rather not risk it.

The rest of the week was pretty mellow - until Sunday.  Sax and Raine were playing in the living room with their golf clubs.  Saxon had taken the end off of one of them and put it in his mouth - just long enough to bump into something - OUCH!!  His mouth was bleeding like crazy, so we rushed off to the ER.  What we found out was he gouged under his tongue and put a hole in his soft palate in the back of his throat.  There's really nothing the doc could do for him, so they just sent us home and said it would heal on its own.

We thought that would be the end of it.  Nope.  I ended up taking Sax into Urgent Care on Tuesday.  When he woke up his right eye was matted shut, and it was pretty red most of the day.  I noticed it had been a little goopy on Monday.  Yup, in spite of the fact he's not around a lot of kids during the day, he had gotten pink eye.  The only thing I can think of is that maybe he got it when we were at the grocery store or if Raine brought it home from school with her.

What a fun 2 weeks!! Always waiting to see what happens next!!

Monday, April 25, 2011

Dads View (3yrs the good,the bad,the ugly).

Well lets give mommy a break,and I'll do a little talking.                                                                                 Pardon the spelling at times,a English major I'm not.But a hard worker and proud dad I am.When Saxon was born we wanted it to be a surprise! a boy? or girl?.Well it turned out to be a boy.What a wonderful feeling seeing your baby arrive.So tiny and noisy and Wow! really hungry.Like nonstop and add a Bili blanket and daily bloodtests.But the big shocker @ wk old the bloodtest showed positive for Cystic Fibrosis.  Cysto Fibosis What? I couldn't pronounce the word.But Mindy crying on the phone told me it was bad news.
Then came the barrage of hospital visits to get medicines dialed in. The kid breathing like a Slestack (Land of the Lost).Way worse than snoring,but at least we could hear him breathing. The worries of what to expect tomorrow.Sax being in daycare and anbx. constantly.Three surgeries for polyps,bronchial lavages, and some work on the boy parts (ouch).Even with good insurance that paid 80-90% of bill.We ended up with aprox. $27,000 bill.So no more savings and very little in the ck book.Lucky I received some inheritance money from a relative.I am very grateful to them. So it got us close to paying it off.I still ended up in collections.Oh yeah i forgot about a couple of stays for pneumonia also.

Where's all this tear jerker for me going you say.

In all this murky water that's been trying to drown us. I've seen the light,(To my friends no I haven't gone churchy on ya).Even with his big sister getting jealous cause of the time we spend with treatments,hospital stays,visits.Thou we spend extra special times with just her.Mindy getting anxiety and panic attacks.And yep me crying a couple of times from from the unknown and pressures of holding everything together.Its hard when a few family members deny CF's in the family and tell ya to get a paternity test. Well I've got a blood test to prove I carry DF508,so yes it's in the family.And to the other family members and friends thanks for being there for us.   

I've learned that my wife leaving her full time job so Saxon can be healthier was the right choice.Hardly been sick from this disease the last year YAY!. Not good on the budget but we have a roof over our heads and still eating.And have been adapting to living each day and enjoying it for what it is, including another day with my family Mindy,Raine and of course another day with Saxon.

And sending thanks out to his CF Team @ Mayo for doing a great job with his health.Thanks Viki Dean,Dr Pianosi,and the rest of the gang.

And thanks to Ronnie Sharpe. Founder of CysticLife ,a great site to learn and help others with CF.Keep kicking CF's booty.I'm proud to be one of the dads on there.                                                                                                                                    

Friday, April 22, 2011

Oh my, a little behind!!

Well, I guess part of the reason I haven't had much to write lately is that not much has really happened lately.  Ok, that's not entirely true.  We've had a little bit going on, and pretty busy schedules.

So to bring things up to date:

Sax went through ECSE screening to make sure he didn't need any additional help besides the obvious complications from his CF.  He did AMAZING on these tests!!  He was in the 6-year-old range for his vocabulary and recognition of objects and pictures!!  Yay!!  We knew he was a smart little whipper!!

Sax hasn't been sick in the last 2 months, so nothing to report from that front :-) 

He's been doing pretty good on the potty training too!!  He goes a couple times a day and is usually pretty good about telling us when he has to potty.  Going #2 hasn't been quite as successful, but he's trying! When I ask him if he's done, he loves telling me "Almost Mommy!! Almost!!"  He's such a little cutie!

Since Sax was doing so well on the Duocal, it's been decided we're going to keep him on it, 3x per day.  We're also trying the Pediasure 1.5, which finally arrived today.  Been waiting for that one for a while!!  Not sure if it tastes any different - it's in the fridge cooling down, so we'll see how well he likes it when it's cold.

It's Spring Break form school, so Raine is home today and Monday too, and was home yesterday.  The kids have been playing together pretty good today, not so much yesterday, but hey, they ARE siblings.  Just glad they're trying to make my birthday a good one!! :-)

Daddy also reminded me that I need to give him the password so he can update the blog once in a while.  Share his thoughts a bit.  So there may be some more input from him on here in the near future :-)  Well, now to spend more of my day with my kids.... hopefully I'll update again soon but with all good news again! :-)

Monday, February 28, 2011

Just a Typical Mayo Day... Or Daddy Got Inked

Wednesday was our day for Spring Checkup!  Hi ho, hi ho, it's off to Mayo we go... or went.  It was a busy day.  It's a really good thing that the way the pre-appointment time was NOT an indication of how the day would go!!

We got off to a late start right away.  I hurried to unload my displays from the trunk so I could put the stroller in, keeping Raine moving and getting ready, packed the diaper bag, and let Daddy finish getting Sax ready.  Since we had to be there by 9am, our plan was to leave about 7:30am.   We had to drop Raine off at my friend's house since she couldn't be at the school before 8am, then dropped off some stuff for a client of mine and decided to hit McD's on the way out so Mama could get a Frappe and Daddy and Sax could get some food.  BIG MISTAKE!!! 

We got the Frappe and the OJ and were asked to pull ahead cuz they needed to make the steak for Daddy's burrito.  We waited...... and waited..... and waited.... and waited..... the worse part of where they want you to wait is that is where the smokers go to have their cigarettes, so even with the windows closed the smell of the smoke got into the car.  Finally we looked at the receipt to see if there was a time on it - we put our order in at 7:44.  By now, it was 7:59.  I sent Daddy in while I pulled the car around to the other side. 

Scot: Where is our food?
Lady: I gave it to you.
Scot: No, you didn't.
Lady: Yes I did.
Scot: You gave me the Frappe and the orange juice and asked us to wait.  Can I get a refund for the food since we're not going to get it?

She turns around and, sure enough, our order was still sitting by the window.  I don't think they would have ever brought it out!!!  So now we're already about 10 minutes behind (accounting for the 5 minutes it normally takes to go through the drive-thru).  We don't have time to deal with talking to a manager, so that got moved to Mommy's to-do list (and it got done Thursday, too!!)

We were cruising along pretty good until we got halfway to Austin and the roads started getting slick, so we had to slow down a bit.  Then when we got almost to 63, the car started acting up.  Daddy thinks it's the torque converter clutch solenoid (tcc).  When I try to speed up, the accelerator pushes back and the car doesn't want to speed up.  If I pull over, turn the car off, and let it sit for a minute, then it usually resets and works again.  Sometimes it resets and works without having to turn it off if I drive like that long enough, which is what must've happened because it started accelerating again ok.  That is, until we got off 52 and were heading to the clinic :-(  Daddy's going to see what he can do about that. 

We parked at the Damon parking ramp, as we usually do, and walked the subway to the clinic.  It never fails - old people walking 6 wide and slow down the hallway so you can't get around them, and stopping to take pictures.  Scot was putzing behind them, so I took over the stroller, said "EXCUSE ME" and speed-walked past them and the 3 blocks through the maze of subways to Mayo.  Saxon was beeping the horn on his steering wheel on the stroller the whole way too, so that helped and people got out of our way!!  We ended up being about 10 minutes late for our first appointment, which was with the social worker.  But that ended up being alright because she wasn't on 16 and ready to go either.  It all ended up working out.

Our appointment with the Social Worker was one that we had requested in addition to the other appointments we had.  We have been having a lot of trouble with our local Human Services office when it comes to insurance.  Our income has not changed even though I started a second job.  Between the 2 jobs I still make less than I had originally claimed on the initial application.  And Scot's income hasn't changed.  However, because I started the 2nd job, the case worker has been threatening to drop Saxon off the insurance because all of a sudden we're too close and are going to go over the income guidelines.  I don't understand this.  Plus she won't tell us WHAT the income guidelines are!!  So we asked the Rochester worker for some help.  She was able to give us contact information for an advocacy program for our county.  (I haven't had a chance to call them yet - but that's a whole different issue.  It's on my list of 'things to do' this week.)  I'm just so tired of the case worker calling and threatening us, then getting letters in the mail saying they don't have our info when I personally hand-delivered it prior to the deadline.

Our next appointment was with Vicki and Dr P.  They listened to him and asked questions about behaviors and appetites and stools and coughs - all the normal stuff.  We reviewed his treatments.  I suggested maybe increasing his CPT time to 25 minutes since it seems that things start loosening up about the time that his vest turns off.  Vicki said that was fine because eventually he'd move up to 30 minutes, so this is a halfway step.  She said there is no reason to do more than 30 minutes in any one sitting because the research shows there is no improvement with more time.  He doesn't seem to notice the extra 5 minutes anyway.  When it was time for Dr P to listen to him, Sax climbed up on the table and was ready to go like a big boy!  Dr P listened to his heart and lungs, and Sax took his big, deep breaths.  We mentioned how gassy Sax still seems to be, and Dr P said it sounded like there was quite a bit of gas in his abdomen.  It was decided that when we come back for his next quarterly checkup that we will see Dr E, the gastroenterologist.  There may be some digestive issues going on.  And when Sax is on his Zantac, it seems that he's a lot more gassy.  He's been dealing with a lot of gas issues since he was born, so we're not sure what to think.....

Sax has grown almost an inch since his appointment in November.  Of course everything is metric, but he's gone from 88.0 cm to 90.7 cm tall, which moved him from 30% to 36% for his age.  Like I said before, we knew he'd be short.  We have no control over that.  There was some concern over his weight though.  Since November, he has only gained .10 kg.  Ok, so it's a gain, but it's not much.. it's not enough.  With him getting a little taller and not gaining weight to go with the height, he has dropped from 61% to 53%. His BMI ranking has dropped from 83% to 67%.  We're happy he's still above the 50% mark, but he's getting closer and closer.  It's not helping that he's been so picky and not eating much lately!! (although last night he did eat green beans and steak!!) 

We didn't do a blood test this round, but probably will next time and recheck his iron levels.  Of course there was the throat culture too.  We haven't gotten the results of that yet, but I expect I should be getting those soon.  Sax is such a good boy when Vicki sticks the swabs down his throat.  He doesn't fight or bite down on the swabs.  He's also very cooperative when it's time to check his ears and nose.  Sax was told he's one of their best patients for that!! :-)

Our next appointment (and the last one Daddy was at for the day) was with the dietician.  We discussed options for increasing his caloric intake.  For his age (with his condition) his caloric need is about 2000 calories per day - which is what a normal healthy adult needs, to put things into perspective.  He loves his vanilla Pediasure, but that's not quite doing it.  Our dietician has requested a case of Pediasure 1.5 be sent to us.  One bottle has over 300 calories in it.  If he like it, we may be able to get that from WIC.  She said we can also add the Carnation powder to it, which we had been doing with his whole milk, to increase the calories even more, or buy the strawberry or chocolate syrup.  And butter.  In spite of what the WIC nurse says, butter is very very good for him.  Cholesterol is not an issue for him because to have cholesterol problems, you have to ABSORB fat.  He doesn't do that anyway, so we're just to disregard them. 

We're also trying something called Duocal.  The dietician has requested a sample of that be sent to us too.  There are 42 calories per Tbsp, so it's very close to the caloric content of butter (except without the fat and salt).  The Duocal can be added to his food and beverages and is supposed to add calories without changing the taste or texture of the food. (More info at

Now, during all of this is when Daddy snuck away, but for good reason.  He is doing his part to help create CF awareness..

Daddy's new CF tat - 65 Roses and Saxon.  This is his left forearm where it can be visible year round, and he's more than proud to explain to everyone exactly what it means :-) 

Daddy made it back just as Mommy and Sax were getting into the car, so he missed lunch and our ENT appointment.  Mommy and Sax went to Red Lobster and had a nice date and were served by our favorite waitress, who just happens to always be working when we're there.  Unfortunately there really aren't many kid-friendly places to eat in that area.  We usually prefer to eat lunch early and avoid the crowds.  We didn't have that option this time because Sax's appointment didn't get done until noon, but we had until before the ENT appointment.

We saw Stephanie and ended up seeing Dr Cofer before we left.  Mommy's been a little concerned because Saxon's left side of his nose has been bleeding a little bit.  I told them he's been doing well with his Nasonex, but we haven't been doing the saline since we weren't told to continue with that one.  Stephanie looked in his ears - which his left tube still looks good and is open, and his right has healed nicely - and looked in his nose and though she found something.  She called in Dr Cofer and they decided to do another nasal endoscopy.  NOT fun holding down a 2 year old while the doctors shove a tube and camera up his nose, then shove a suction tube up there.  Poor little man!!  At least it didn't bleed much this time!!  The sucked some nasty boogies out so they could see better.  It was a pretty clear path too!! Only one little polyp starting to form in the left side, and nothing in the right!!  Yippee!!  Dr Cofer gave him clearance to come back in 6 months now instead of 3.  The only change she made to his routine is the addition of saline nasal spray once or twice a day to help clear out the nasal mucus.

So all in all, it ended up being a pretty good day of appointments.  We stopped on the way home and got a new pet (for Mommy).

My hamster Saxon named Mouse
So I'll leave you with some fun pictures from the past week.....